Derry support group seeks to help those living with a rare condition

Members of the North West Rare Disease Support Group are meeting in the Holywell Trust, Derry on Friday 9 June from 2pm until 4pm.

The group is supported by Northern Ireland Rare Disease Partnership (NIRDP), the charity working to advocate, connect, educate and innovate on behalf of the ‘1 in 17’ people living with or working with a rare disease in Northern Ireland with a vision that “no-one is disadvantaged due to the rarity of their condition."

NIRDP provides a Rare Disease Virtual Support Hub to offer information, support and guidance across Northern Ireland and provide the secretariat for the All-Party Group on Rare Disease at the NI Assembly.
  
A disease is defined as rare in Europe when it affects less than 1 in every 2,000 people.

Sandra Campbell, Chair of the North West Support Group said: “Living with a rare disease that no-one has heard of can be a lonely and isolating experience and our group is a vital support network in the North West. 

"We as always are delighted to welcome regular members to our meeting but would very much like to extend an invite to anyone in the North West who is affected by rare disease to reach out and join us. 

"We also welcome Health Professionals with an interest in rare diseases. Whilst one condition may be rare, collectively rare diseases are common and affect over 120,000 people across Northern Ireland. 

The Northern Ireland Rare Disease Partnership works to Advocate, Educate, Support and Innovate on behalf of the community across Northern Ireland living with a rare disease.”

Guest speakers at the support group meeting will include Caroline McFerran- Community Navigator for NIRDP- and Rosaline Callaghan of Amyloidosis Ireland and recently appointed Development Officer with the Northern Ireland Rare Disease Partnership. 

Attendees will also have the chance to talk and network over a cuppa.

Caroline shared: “I am delighted to attend the North West Support Group meeting and I am excited to be there to offer information, support and advice to attendees.

“This event is free to attend and it’s a great opportunity to have a chat with other people in the North West who are living with a rare condition."

Rosaline added: "The talks are informal, there’s always a laugh or two, and, of course, a wee cuppa of your choice, so please come along."

While there is no cost to attend, booking is essential to help with planning, so please email support@nirdp.org.uk or telephone 07704476929 to secure your place.

The meeting will be held in the Holywell Trust, 10-12 Bishop Street, Derry, BT48 6PW on Friday June 9 from 2pm – 4pm.